The European Haemophilia Consortium has published its May 2017 Newsletter.
In this issue:
Pg 03: President and CEO Report
Pg 05: EHC News
Pg 05: Comprehensive Care in Haemophilia: Inhibitor management
Pg 08: EHC Round Table on Clinical Trials in Haemophilia A
Pg 12: Tools to pursue dreams: Youth Leadership Workshop
Pg 13: From youth to senior: not a matter of age
Pg 14: World Haemophilia Day 2017
Pg 16: First European Inhibitor Summit
Pg 17: Experience of a parent at the Inhibitor Summit
Pg 18: EHC welcomes new staff member Declan Noone
Pg 20: New working group on women in the bleeding disorders community
Pg 22: In loving memory — An appreciation of Gordon Clarke and Edmond Secq
Pg 24: NMO News
Pg 24: Meet Guus Wijfjes, new president of the Dutch NMO
Pg 26: HemoNED, the Dutch haemophilia patient registry
Pg 28: Ascending Mount Hoverla in spite of haemophilia
Pg 36: Summer camp for children with haemophilia in the Ukrainian Carpathians
Pg 37: First APH meeting of people with haemophilia and inhibitors
Pg 39: Feature Articles
Pg 39: Researcher spotlight: Professor Roger Schutgens
Pg 42: The Lighthouse Project
Pg 44: My experience with desmopressin
Pg 45: No stone unturned at the 10th EAHAD Annual Congress
Pg 47: Second EURORDIS Multi-Stakeholder Symposium
Pg 49: Announcements
Pg 49: EHC calendar of events
Pg 49: Other events
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
